I had my six week scan review yesterday—twenty months of stability and counting. At these appointments Dr. Shaw always gives my lungs a listen and this time she kept her stethoscope pressed to my back a little longer than usual and I wondered what it was that she heard. Nothing, as it turns out. I’ve had a little wheeze in the bottom of my upper left lobe all along, but for the first time, she couldn’t find it. ‘Maybe I’m cured’ I said. ‘Maybe you are’ she replied. Or maybe that’s just what I imagined.
What she did say was that she was relieved as she’d been feeling a little anxiety as to what might transpire after my being off drug for a week. Me too. It might be coincidence but my progression on crizotinib followed a break from therapy when I had surgery on a shattered left ankle. And resistance to zykadia came in the wake of my second bout of liver toxicity and subsequent pause in drug.
My labs three weeks ago indicated elevated amylase. My liver enzymes have been only mildly elevated on PF-06463922 so I have continued to enjoy a glass of wine most evenings. Now alcohol was no longer an option.
And why the break in drug? Two weeks ago I began to feel really crummy. A virus, probably strep throat, and then several days later a sinus infection as well. I was also really constipated, an unfortunate side effect of treatment. But then I started to get really uncomfortable with a burning pain in my abdomen and super nauseous–combined with my elevated amylase these symptoms were highly suggestive of pancreatitis. I was in touch with Dr. Shaw, who had prescribed an antibiotic for the ear infection. She felt it would be wise to test my amylase again and as I had an appointment with my ear nose throat doctor on Wednesday we agreed to do it then. In the meantime I would fast and drink only clear liquids so as to give my pancreas a rest. By late Tuesday I was feeling so very bad that I texted Alice and asked her if I should consider going to the emergency room.
Alice called me back and when I told her I felt this represented pancreatitis her response was ‘Linnea, I really hope you don’t have pancreatitis because if you do, it would be grounds for exclusion from almost all further clinical trials.’ This was news to me. Just the day before I had spoken to a friend who’d been excluded from a trial for pancreatitis but I was under the impression that hers was a singular experience pertinent only to that particular trial.
So I told Alice I was not going to get my amylase tested again–that I hadn’t come this far only to learn that I had no more treatment options because of an elevated lab result. She said we’d see how I felt the next day. The following morning I received a text from her asking me how I felt. My guarded and completely disingenuous response was ‘Hi. Better.’ She then gently but firmly urged me to come in for labs. And I responded with this message:
‘Alice, I guess I haven’t been paying attention but until I spoke to Margaret I did not know it was grounds for exclusion and it was only after speaking to you that I understood that exclusion meant virtually all trials. I have a very strong commitment to surviving and treatment options are part of my hope for the future. Under any other circumstances I would get that lab work done but as it stands, it is absolutely not in my best interest in the long run. I’m sorry. I would like you to advise me as to how long I can safely hold food for though. Thanks.’
Alice Shaw is a fabulous doctor and I consider her a friend as well. I admire her in so many ways and one of them is how she can just roll with the punches. She heard what I had to say and yet stood her ground. She advised me that if I were feeling better and merely had an elevated lab result it would not be considered pancreatitis. I needed greater reassurance–‘Would that protect my future options?’ She repeated what she had already said, that a lab test alone should have no impact.
So I assented. I got the lab work done and it came back completely normal. Only then did I acknowledge that I still felt absolutely awful. A quick reassessment of symptoms and Alice surmised that this was likely gastritis and possibly a peptic ulcer, which I could address with laxatives and anti-reflux medication.
We also talked a little bit more about what could have happened if I’d actually had pancreatitis. I told her that I felt these sorts of exclusions were patently unfair, and she said that the rationale behind the exclusions was that certain individuals were more likely to experience serious side effects.
I don’t buy it. When I entered my first clinical trial in 2008, I was taking on enormous risk–the only other person in the trial had died almost immediately, in large part because of the toxicity of the experimental therapy. Knowing this did not in any way deter me because I understood that if I chose not to enroll in the trial (my only hope and a thin sliver at that), I would be dead within a couple of months anyway. It was a no brainer.
My explanation to Alice was this: If I experienced life threatening side effects I might be fucked but at least I’d be fucked with options. But that having no treatment options meant that I was totally fucked as I would experience the most devastating adverse event of them all—I would be dead. And that it is my viewpoint that patient safety might be a secondary concern to getting drugs to market faster and without hitches (like adverse events).
I trust Alice implicitly and know that she is highly invested in my personal outcome. However, I hold no illusions about what it means to move from patient to participant in a clinical trial–the loss of autonomy can be really, really frustrating.
In the end, nobody loves this life of mine as much as I do and self advocacy is key to survival. Woody Allen once said that 80% of success is showing up and when it comes to tomorrow, I will not be a no show.
life and breath: outliving lung cancer 
Very happy to hear labs were normal! Thank you for providing some insightful info on clinical trials. Keep on dancing!
Thank you Katie!
Linnea
Love the way you push through obstacles, so glad the lab work cooperated with you!
Oh me too!
Linnea
Hooray for you. I love the way you can communicate with your doctor. I also have lung cancer – two primaries , one in each lung lung, diagnosed in 2011. I had surgery, oral chemo, radiation. I am five years out now and consider myself very lucky. I am being treated at MDAnderson in Houston.
I do so envy the rapport you have with your doctor. I have a great onc, but doesnot seem to be pleased when I have questions. I try to be as pro-active as possible. Thank God for his NP who will talk to me. I am stable now but know that sooner or later, clinical trials will be my only hope. You are a true role model.
Mary, Alice (Dr. Shaw) is a godsend. It is so much easier when you can say what’s on your mind and to feel as if you can ask/discuss whatever you need to. I am glad you have the NP. And I wonder if your oncologist is even aware of how he makes you feel?
Linnea
How about one of these tomorrow’s we get together? Another road trip in the wrong direction?…
I would love to go to Gloucester again with you.
❤ Linnea
While this may be a preclusion for many trials, there is usually a way to qualify for compassionate use. Never stop “showing up”!
Oh, and I would try to get into that door anyway I could 😉
Linnea
Hope you feel better each day. I always draw inspiration and further knowledge about this darn disease from your writing. Glad to know about the pancreatitis diagnosis on clinical trials. As a stage 4, ALK+ NSCLC survivor on crizotinib for almost 4 years, I feel like we are on the same road and you are leading the charge for LIFE! Here’s to “Tomorrow Morning” I’m there with you!
Peace, Joy, Love and Happiness!
Ellizabeth
Elizabeth, four years is amazing! Ride that horse as long as you are able but how lovely to know that there will be options when it is time to get off.
Linnea
For many, many reasons I am so thankful you blog. Keep writing so I can keep reading ang learning.
Thank you Luna, what a compliment. I am so happy that you blog as well. This is how we show the world the many faces of lung cancer.
Linnea
First I hope you are feeling much better and all issues have sorted out to be ok. I SO understand what you say here. It is an unimaginable place to be and your bravery and self advocacy are amazing. This is really an amazing post, i have been in treatment for st 4 LC EGFR for one year and nine months. I have been fortunate to avoid too many serios side effects to date. I have had radiation pneumonitis and now am experiencing problems with liver enzymes. It fear and feel treatment options potentially shrinking.
I also see and feel the changes long term treatment bring about. You are a true inspiration and I love that you generously share your experiences. But its all about getting the best and getting what we need. To persistence, perseverance and good results above all.
Linda, it is tough. We have the cancer to contend with but also the side effects from treatment which can be just as debilitating if not more at times. But we push on through because we know we have to/want to!
xo Linnea
I am sure you were very scared during this episode Linnea and I am glad that your wonderful doctor listens. She heard you and then made her best professional recommendation. I am glad it turned out well for you. I am sure you remember that Guillermo fought to the end and tried many rounds of chemo. At times I thought his body was too weak but the decision was not mine to make, it was his. All I could do was support his decisions about his treatment/s. Continue to fight like a warrior Linnea. It’s your life and your choices.
With much admiration, Beryl
Hi Beryl—I just saw your comment. I remember only too well how hard Guillermo fought and it must have been a terrible thing at times for you to watch. The will to live is strong and mine only grows more fierce (as dose my occasional demeanor). Sadly, this being a patient thing is trial and error, and I could have made a career ending error in this instance.
xo Linnea
Your dilemma with testing for pancreatitis hit home. It is my wife (Johanna) who is ALK+, and has been on the ARIAD drug trial for the last 10 months, having ultimately failed on Xalkori due to progressing brain metastases.
The clinical trial sword is double-edged and very sharp indeed. Given her extensive brain metastases, 2nd-generation inhibitors are her only hope. But what many people may not realize is that all sorts of conditions will exclude you from these trials, and there is rarely wiggle room. Had a TIA a year ago? You’re out. Have GI absorption problems? You’re out. Abnormal EKG? You’re out. Which means every single time a new symptom crops up, you are forced to decide whether it is worth risking your life (a consequence of trial exclusion) by seeking medical treatment!
It is beyond absurd that to survive, you end up having to roll the dice on going to the ER or getting that lab test. Say too much to your doctor — had you actually had pancreatitis — and your candor with Alice would have been your demise.
That’s reality, and I don’t have any solution beyond extreme vigilance before each step. I just had to chirp in my support, and reassure you (and more importantly, those reading your blog who are new to this kind of problem) that many of us struggle with precisely this cruel aspect of the medical / clinical trial system. The very same pharmaceutical and medical establishment that is saving your life can also be the one that, if you say or do the wrong thing, will coldly end all hope in one fell swoop.
And while a physician’s license is on the line if they do not advise you to seek testing for possible pancreatitis, the stakes to you — the patient — are infinitely higher, as you eloquently explain.
Thank you for writing about this, and sharing your pancreatitis example! Its importance can’t be overstated.
Brian
Brian, I just saw your comment today. You describe eloquently the (cruel) dilemma we face. I grow less and less gentle the further this journey takes me. I told someone recently that I am like one of those animals who is caught in a trap and then chews their own leg off to escape. Sadly, the longer you survive while in treatment, the more difficult it becomes to continue that survival—I described it to Alice as a bottleneck effect. It is good that your wife has you as an educated advocate. I wish you both the very best.
Linnea
Dear Linnea,
Love your brutally honest blog. The NSCLC that spread to my brain
has also led me to the PF-06463922 Lorlatinib trial with great
results also. But difficult side effects including excessive sweating
during mild exertion, roaring horrible constipation and high Lipase
levels. Met Dr. Shaw after I exhausted all treatmenr options at
Hopkins, last year. She recommended this study. My home is
that we can both stay on. Wish you the best.
Hello again! I responded to your other comment and yes, we share side effects. I’m glad you brought up the sweating—I really haven’t focused on that and sometimes have wondered if it was just me, but yes, I have these crazy flop sweats–it can be rather embarrassing. However, the good new is that we are alive and hopefully can get a long ride on this drug.
Best,
Linnea
Thank you for your fast responses to both my comments. Your blog is a wonderful testament to self medical activism. The most knowledgable patients get the best care. It is time now with the internet, that we accurately and professionally educated patients can help educate others about what it is really like to be on a clinical trial. Regards, Dots
Sent from my iPhone
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Hello Linnea,
I too am on 3922. Just celebrated 6
months on the drug. Have problems with constipation getting more severe
with time. Participating in the trial at Sloan Kettering in NYC. Having
problems getting consistsnt blood
results for Lipase. If this pancreatic
enzyme gets too high bye bye study.
Hi—I have had issues with cholesterol and constipation (boo) as well. Fingers crossed your pancreatic enzymes behave—mine came down right away but I am also not drinking any alcohol and I was before. Best of luck—ride this horse as long as you are able!
Linnea
Thank You, for your second response as well. I ended up meeting Dr. Shaw last Fall while I was on Crizotinib. I already knew my time was running out on that drug because a new brain tumor was found and quickly cyberKnifed. Then in Oct my chest tumor grew. By Nov I was undergoing screening for 3922.
There is one main area of NSCLC science I wish I could influence. Though I never smoked and my parents did not either, I was exposed to 25X the safe level of radon, which is 2 pico curie units. (I hope I got that right.) The level is listed in EPA and NCINIH literature. This happened to me from 1966 to 1976 in an unfinished basement. But, no one knew about Radon gas then. Still, my parents, retired physicians, felt horrible. I played in the unfinished basement, with crawl space, with my friends more than my sister did. Thankfully, she is well.
What I want is a longitudinal study done, like they did for smoking. Because all the physicians who have treated me have said they are not interested in my exposure to radon, and they do not believe there is a direct causal link, while there is Government data that says otherwise. What we need, what I need, is a tobacco like long timetable study, and at the end of it for the Surgeon General to say “We now have enough scientific data that we, can say, unequivocally that exposure to radon gas over an extended period of 10 years can and does cause lung cancer. While I was still going Hopkins, if I went to clinics for other specialties; they always asked me if I smoked. Never, “Is it possible you were exposed to an environmental toxin like radon, etc.” My cancer docs did not understand why I cared. I want them to care too.
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are you Ros1? Or ALK?
Thanks. It sounds like all’s well. Good to know. I’m planning to go on it soon.
I am ALK+. Best of luck!
Linnea
Linnea, I am having trouble resetting my password on wordpress from my iPhone. I will try to do it on my iMac later. Yes, I am ROS1, part of a family of ROS mutations of the ALK branch. But, I am ALK negative. I will try to do a proper post later. Dots
Sent from my iPhone
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I hope you got my other email. Yes, I’m ROS1 positive but ALK negative. Lorlatinib has kept my brain mets away! Dots
Sent from my iPad
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I am ROS1 and have just complete 27 weeks or 9 cycles and have stable disease. After the first 6 weeks I had 30% shrinkage of my tumor and lymph nodes in my upper mediastinal region of my right lung. I have had one brain surgery and four other lesions cyber knifed. Right now my brain is clear! Dr Riley at Sloan Kettering in NYC is my Dr. He said Lorlatinib will probably be approved ten months from now, amazingly fast.
It sounds as if you are doing really well–that’s great. Also good news that lorlatinib could be approved relatively soon!
Linnea
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